Day 36 Pre-B ALL Relapse
Picture this: Team Bella standing in the middle of a game of “poison ball” but instead of the one ball being tossed our direction, 3-4 are tossed at any time, from any direction. 😱😱😱
This week has made me feel exactly like this. We’ve had 1, 2, 3 & even 4 medical issues thrown at Bella but sometimes her ailing body, just simply cannot cope! So it starts to shut down.
But Bella never once complains. She doesn’t throw a tantrum because the nurse needs to take bloods. Do obs constantly over night. Or the 5 machines incessantly beep driving (mainly mum) up the wall. She quietly tells me, “Sore tummy mummy. Can I have more morphine?”😢
This is our fight. This is our journey. So many times I’ve thought , please just transfer the pain to me because I can’t bare to watch her suffer another day. Another hour. Another minute. Another second.😢
Another tumultuous 48hr for team Bella. Following port removal Bella developed quite severe fluid retention (cause: low albumin levels) leading to swelling/inflammation everywhere. Cause: Excessive amounts of fluid -in the form of antibiotics had to be given intravenously through the peripheral (as her central line -port was removed due to infection). It had run it’s course. Bella had used it for 3.5yrs. 🙁
Her body unable to absorb over 250ml/hr. Her weighted fluid intake/mass is calculated at 58ml/hr. She was given 5 times the dose her little body could cope with. 😱😱😱😱😱
To provide you with an idea of how much fluid she was retaining:
She had put on over 2kg fluid in under 2 days. Weight prior to surgery/fluid retention=17.4kg. Now she weighed 19.4kg! 😯
My poor baby looked like a Cabbage Patch doll! Her face, legs & body was swollen beyond the normal, expected steriod/chemo inflammation range.
Bella had to also contend with urine retention. Most prob caused by the morphine. I was concerned & requested the oncologists to look into this. She could not wee. It wasn’t a UTI. Her wee was also dark orange/brown. Not normal considering meds given this week weren’t coloured to explain marked urine colouring. Colour indicates severe dehydration & possibly other issues which doctors will investigate today. She has also been extremely thirsty indicating low Na levels in her blood stream. Oncologist gave her Frusemide to help her to urinate but the issue still persists this morning.
Morphine: works like a double edged sword. Numbed pain but had so many side effects! 😱 Constipation meds: when to request it, when to withhold it. Every single thing you do for an onc patient needed to be balanced. Otherwise their condition could deteriorate in the matter of a day if we get it wrong!
I requested after- hours review because Bella’s abdo pain hadn’t improved. We needed to rule out constipation causing distension & abdo pain? Dr Trung (after onc Drs arrived 11.30pm. Reviewed Bella. X-ray done without Bella having to leave her room. Results indicated she was indeed constipated. Last bowel movement 24/4/17.
There is also a lot of air in her abdomen & fluid retention which needs to be addressed today.
Two hours sleep last night. But that’s ok. I’ll sneak in a nap sometime today. Besides, I’m not the patient enduring this constant attack on her body. I am merely watching on the sidelines, praying, hoping for a break for our Bella.
Shared Rooms/Double Rooms:
I had met Wed (yesterday) with Mary Mc Gowan (Manager Parent Advidory Commitee Oncology Dept). I had discussed an idea I had RE: Shared room/Double Room issues oncology families face when admitted into those rooms. Most families dread being placed into one. I certainly prefer my own, private room to support & care for my child.
For any onc family, these shared rooms can present another level of distress upon an already overwhelmed family.
There is a curtain providing a partition b/w the two rooms. Every single noise, confidential discussion spoken in either rooms is shared. 🤔🤔
Could PAG place a glass partition in the centre of either room to remove the “white noise” & issues surrounding confidentiality?? I told her, RCH has this partition in double rooms in ICU why can’t we apply it to the oncology ward? She asked me to leave it with her. This partition would only solve the confidentiality issue, but not the cross-contamination issue. We cannot change the world, but we can help bring change to our oncology ward.
Yesterday I met with Mary, she is meeting with RCH Projects Team later this week to discuss the partition. It is going to happen in the coming months! I couldn’t believe how fast my idea had translated into a result. A win for ALL of the beautiful oncology family who travel this treacherous journey. Team Bella is in your corner!
I believe that everything happens for a reason. Team Bella has several causes close to our hearts now. Raising awareness about Childhood cancer, Increasing Blood donations, increasing ethnic diversity within the International Bone Marrow donor registry, supporting organisations which have supported us through this journey like Challenge, Camp Quality Victoria.
We want to make a difference! Raising awareness.
Team Bella: Never give up! 💪👊❤💚💙💛💜